Re: Questions regarding tubes - Jen

[Guest guest]

Jen - Food has been an issue in our family since Victor was born

(suppose we're not the only ones!), even though I think it has been

working quite well over the last year. But once in a while I

question myself: do I give him the right food? He has normally

three meals of the nutrition drink (breakfast, afternoon break and

before bed). In school he has a morning snack containing of a

sandwich with butter (don't want cheese) and some nutrition drink.

For lunch he has pasta with parmesan cheese in school (he won't

taste meat or fish or vegetables). For suppper and lunch on weekends

he still has the baby food in jars, to which I add rape seed oil

(which I've been told is the healthiest) MaxiJul (Carbohydrates) and

1/2 eggyelk or some extra meat if I have leftovers. From this I make

a puré with a hand mixer, it's the only way to make him eat it. (And

he is still beeing fed by Mommy, who also reads a book to him. I

think we'll never get over this habit.)This has been working well

for a long time.

Normally he also has something together with our supper; pasta,

sausage, mashed potatoes..

Choccolate and cakes he doesn't get every day. Normally only when we

have guests or other occasion (at Grandmother's for instance). From

the sweets he gets at birthday parties he only eats a part, the rest

he gives to us. Anyway, it feels good to hear I'm not the only one

who thinks cakes and sweets should not be part of RSS children's

normal diet, and thinking about their future health.

Next step for me right now is to find out more about Canola oil

(it's not on my dictionary, so I don't know what it is, but I will

ask my Irish neighbour) and try if he likes pinto beans.

I'm also waiting for an answer from his endo when we are going to

start the GH treatment, we have been waiting and asking for almost a

year now.

/Camilla

> > > > Hi all,

> > > > I have a few questions about feeding tubes. It seems that

> most

> > of

> > > > the kids have them. Can you tell me at what point they seem

> to

> > > need

> > > > them? Our Ped wasn't following Noah that closely (will be

now

> > and

> > > > I'm considering changing ... took me 3 mos to get the

> chomosome

> > 7

> > > > results that I'm sure were sitting there that long).

> > > >

> > > > Noah has never been sick and in hospital, he seems to eat

but

> > it's

> > > > not much at a time, I'm getting really worried that we

aren't

> > > doing

> > > > enough except at the same time I'm worried that he will need

a

> > > tube.

> > > > Do you know what I mean? We were worried lately about

> > > hypoglycemia

> > > > he's always been a sweaty little guy (but then my others are

> too)

> > > and

> > > > lately he started waking in the night ... we've been giving

> him

> > > milk

> > > > not knowing if it was his sugars or if it was just

> behavoural.

> > > Also

> > > > since finding more info about RSS from here and Magic, I

> started

> > > > putting a little corn starch in his milk before bed.

> > > >

> > > > I'm hoping the endocrinologist will shed some light next

week

> > when

> > > we

> > > > go cause we don't see the ped until november. I'm also

going

> to

> > > ask

> > > > about that drug that starts with P for appetite. Sorry not

up

> > on

> > > all

> > > > the names yet. I'm going to see if he'll check Noah's sugar

> > when

> > > he

> > > > does the other testing. We haven't been to the ped since

the

> > > spring

> > > > so I don't even know if NOah has gained weight or not.

> > > >

> > > > Do the kids eat too when they have tubes?

> > > >

> > > > Dawna

[Guest guest]

Sounds like you are doing a great job! I didn't realize you lived

in Ireland, so am not sure if canola oil is available there. Re the

feeding him while he watches TV or you read him a book. Hey,

whatever, ya know? I've learned never to judge anyone because we

all end up in similar places at different times. Ken, the

moderator, can tell you great stories of he and his wife feeding

their son (although he will also tell you that when his son's aunt

babysat for a weekend or something like that, his son ate on his own

just fine.... so I do wonder sometimes if our kids learn to

manipulate us. But again, what works, right?)

Jenn

> > > > > Hi all,

> > > > > I have a few questions about feeding tubes. It seems that

> > most

> > > of

> > > > > the kids have them. Can you tell me at what point they

seem

> > to

> > > > need

> > > > > them? Our Ped wasn't following Noah that closely (will be

> now

> > > and

> > > > > I'm considering changing ... took me 3 mos to get the

> > chomosome

> > > 7

> > > > > results that I'm sure were sitting there that long).

> > > > >

> > > > > Noah has never been sick and in hospital, he seems to eat

> but

> > > it's

> > > > > not much at a time, I'm getting really worried that we

> aren't

> > > > doing

> > > > > enough except at the same time I'm worried that he will

need

> a

> > > > tube.

> > > > > Do you know what I mean? We were worried lately about

> > > > hypoglycemia

> > > > > he's always been a sweaty little guy (but then my others

are

> > too)

> > > > and

> > > > > lately he started waking in the night ... we've been

giving

> > him

> > > > milk

> > > > > not knowing if it was his sugars or if it was just

> > behavoural.

> > > > Also

> > > > > since finding more info about RSS from here and Magic, I

> > started

> > > > > putting a little corn starch in his milk before bed.

> > > > >

> > > > > I'm hoping the endocrinologist will shed some light next

> week

> > > when

> > > > we

> > > > > go cause we don't see the ped until november. I'm also

> going

> > to

> > > > ask

> > > > > about that drug that starts with P for appetite. Sorry

not

> up

> > > on

> > > > all

> > > > > the names yet. I'm going to see if he'll check Noah's

sugar

> > > when

> > > > he

> > > > > does the other testing. We haven't been to the ped since

> the

> > > > spring

> > > > > so I don't even know if NOah has gained weight or not.

> > > > >

> > > > > Do the kids eat too when they have tubes?

> > > > >

> > > > > Dawna